In this time of bitterness and provocation, a handful of legislative proposals exist that can command bipartisan support. One of these was introduced on December 4 by Rep. Cathy McMorris-Rodgers (R-Wash.), a 20-year member of Congress who has chosen to end her time in national office by strengthening legislation to which she has devoted years of concern. The proposed ABLE Tomorrow Act is the latest in a string of measures designed to allow disabled Americans to create and invest in tax-favored 529 accounts.
The core objective of multiple ABLE bills (the acronym stands for Achieving a Better Life Experience) over the years has been to address one of the thornier challenges in public policy, the dynamic that occurs when government programs like Medicaid and welfare support convey disincentives to work, save, and build independence. Until the enactment of the original ABLE Act in 2014, disabled Americans were subject to an asset limit of $2,000 and an extremely low-income limit if they were to remain eligible for Medicaid and SSI benefits. The act, which was cosponsored by a record 458 members of the House and Senate at the time, allowed qualified Americans to earn certain income and secure savings for retirement that would foster work now and avert poverty later in life.
The need for the law was in many ways a reflection of good news in society regarding health and lifespan for the disabled. These issues touched McMorris-Rodgers personally. She has spoken publicly with dedication about her son Cole, born to her and her husband Brian when she was a relatively new member of Congress in 2007. During her time in office, she has been a champion not only for financial security and opportunity measures for the disabled but for the right to life of children in the womb. Of Cole she wrote passionately on Twitter in 2020, “Cole’s life couldn’t be further from what we were told. He’s opened our eyes to the dignity and potential of every life. He’s reminded me that just because challenges in life are hard, it doesn’t mean they aren’t valuable.”
Widening recognition of these truths has contributed to the higher degree of concern about care for and legal protection of the disabled, with encouraging changes that hold out hope for more comprehensive support for the vulnerable. Dr. Brian Skotko, a Harvard-trained physician who has researched and written extensively on Down syndrome and other conditions, has documented how families raising a child with the syndrome see their lives. As he said in a recent interview, “[N]early 99% of people with Down syndrome state that they are happy with their lives; 88% of their brothers and sisters believe that they are better people because of their sibling; and 79% of parents feel that their outlook on life is more positive because of their child. The Down syndrome of today is not the Down syndrome of yesteryear. That’s not because the genetics have changed; we have.”
McMorris-Rodgers followed up the original ABLE Act with a series of related bills to strengthen the law. Since 2014, she has advocated and Congress has passed three more ABLE bills. The ABLE to Work Act, signed into law by President Trump in 2017, allowed an individual to save earned income annually up to the federal poverty level over and above the annual allowed contribution to the 529 account. The ABLE Financial Planning Act, likewise enacted in 2017, allows the conversion of 529 accounts that may have been created for education savings into an ABLE account, while retaining the annual contribution limit of $14,000. The ABLE Age Adjustment Act, signed into law by President Biden in 2022, increased from 26 to 46 the age at which an ABLE account may be opened, opening a pathway for people who encounter a debility later in life, such as an accident, mental illness, multiple sclerosis, Lou Gehrig’s disease, and paralysis or other ailments.
The proposed ABLE Tomorrow Act proceeds in the same spirit. It would make the ABLE to Work Act and the ABLE Financial Planning Act permanent, eliminate the clawback of Medicaid funds authorized by the first ABLE Act, and allow an employer to make contributions to an ABLE account in lieu of contributions to the employer’s defined benefit plan. Other provisions of the proposal are designed to encourage increased public awareness of the options these bills have made available, including tasking the Social Security Administration and the Department of Veterans Affairs to educate families when applications for SSI or SSDI benefits are being made. Altogether, the goal of the legislation is to secure the status of the accounts, foster long-term planning, and encourage beneficiaries and their families to take opportunities to address economic insecurities that can become daunting later in life.
On December 19, the 10th anniversary of the signing of the original ABLE Act, guest bloggers posted on the Social Security Administration site noting that since its enactment the law has been accessed by only an estimated 3% of those eligible. Since 2016 some 187,000 people have opened accounts with a cumulative $2 billion in assets, roughly $11,600 saved and invested per account. Clearly, there is room for growth in such a consensus program.
The latest ABLE Act moves forward as before with support from a broad spectrum of groups, including the National Taxpayers Union, the Special Needs Alliance, Autism Speaks, Disability Independence Group, The R Street Institute, and dozens more.
In other good news in December, Governor Kathy Hochul (D) of New York signed into law the Down Syndrome Awareness Act, a measure originally introduced in 2017 by State Senator Robert Ortt, a Republican. Ortt worked together with Assembly Democrat Karen McMahon with the goal of ensuring that families who receive prenatal diagnosis of a disability receive a panoply of information about the medical and care options available for these special needs in modern society. McMahon has commented, “Families must have access to all the information and resources they need when raising a child with a disability. This bill would help ensure that families receive essential support and guidance, improving the care and understanding of children born with Down syndrome.”
Ensuring that these same resources are supplied to families nationwide, where alarming predictions about a child’s future course certainly contribute to high abortion rates after diagnosis, remains an urgent task. It has been 16 years since the enactment of the Prenatally and Postnatally Diagnosed Conditions Awareness Act, also known as the Kennedy-Brownback Act after its bipartisan Senate sponsors, the late Ted Kennedy of Massachusetts and Sam Brownback of Kansas. Despite that across-the-aisle combination and the bill’s worthy aims, it has not been implemented, leaving action to the states and an array of nonprofits who vary greatly in their willingness to affirm the right to life of children diagnosed prenatally.
On the hopeful side, at least 46 states and the District of Columbia have ABLE programs. With some federal grant support, Dr. Skotko has created a new resource called Down Syndrome Clinic to You (dsc2u.org) that provides a comprehensive array of world-class medical information about Down syndrome that families can access and share with their medical providers. Dr. Skotko notes that even with today’s progress in addressing the medical needs of people who have Down syndrome, fewer than 5% of families have access to specialty clinics like his at Massachusetts General Hospital.
Other important initiatives gaining ground today include Be Not Afraid, which connects parents with organizations it has trained to provide life-affirming support after a diagnosis. Mark Bradford, founding president of the Jerome Lejeune Foundation in the United States, is now a fellow devoted to advocacy for individuals with intellectual and developmental disability at the Catholic ministry Word on Fire. The site offers a wealth of articles and video materials.
Much more in this vein — as with awareness of the ABLE options — is needed. The new team of leaders at the Centers for Medicare and Medicaid Services, the National Institutes of Health, and the Centers for Disease Control could do a great deal that is transformative in this area if the incoming secretary of Health and Human Services directs.
As the new year begins in Washington, D.C., and across the nation, a fresh opportunity exists to expand services and support for people with disabilities — an opportunity actors of all political persuasions can embrace. What has been an area of progress in both medicine and appreciation of the capabilities of people with disabilities can become a true renaissance.
Chuck Donovan served in the Reagan White House as a senior writer and as Deputy Director of Presidential Correspondence until early 1989. He was executive vice president of Family Research Council, a senior fellow at The Heritage Foundation, and founder/president of Charlotte Lozier Institute from 2011 to 2024. He has written and spoken extensively on issues in life and family policy.